Reset the clock ... if you know what I mean. Your journey starts anew now.

And may it be all onward and upward from here.

Yours is another shining example of why I constantly tell people not to ever give up on refining their diagnosis. I truly believe ME/CFS is just a cluster of symptoms that represents one or three or 20 or 100 different illnesses -- many of which are very rare, some of which haven't yet been discovered.

Reset the clock ... if you know what I mean. Your journey starts anew now.

And may it be all onward and upward from here.

Yours is another shining example of why I constantly tell people not to ever give up on refining their diagnosis. I truly believe ME/CFS is just a cluster of symptoms that represents one or three or 20 or 100 different illnesses -- many of which are very rare, some of which haven't yet been discovered.

Senior Member

CONCLUSIONS:
A significant number of patients reported ophthalmic symptoms, and many had objective findings on clinical examination consistent with these symptoms. To our knowledge, this is the largest case series of ophthalmic findings in patients with LEMS and indicates that these patients warrant a complete ophthalmic examination.

Senior Member

Lambert Eaton myasthenic syndrome (LEMS) is a disorder of the neuromuscular junction. The neuromuscular junction is the site where nerve cells meet muscle cells and help activate the muscles.[1] This syndrome occurs when antibodies interfere with electrical impulses between the nerve and muscle cells. It may be associated with other autoimmune diseases, or more commonly coincide with or precede a diagnosis of cancersuch as small cell lung cancer. Symptoms may include muscle weakness, a tingling sensation in the affected areas, fatigue, and dry mouth.[1] Treatment of an underlying disorder or cancer is the first priority of treatment.[2]

You're making sense. I just have not heard of autoimmunity being a consequence of ME/CFS. There are people with autoimmune conditions who do have ME/CFS but I don't think ME/CFS causes autoimmune conditions. Of course you could have both but I go with the most obvious explanation first. You've been given a rather solid diagnosis of LEMS, and I read that LEMS is rather rare, so I just think the odds are that it is the cause of your symptoms. I'm afraid I cannot get any more scientific than that, but hopefully someone else here can!

IG: @crypt0cu1t

You're making sense. I just have not heard of autoimmunity being a consequence of ME/CFS. There are people with autoimmune conditions who do have ME/CFS but I don't think ME/CFS causes autoimmune conditions. Of course you could have both but I go with the most obvious explanation first. You've been given a rather solid diagnosis of LEMS, and I read that LEMS is rather rare, so I just think the odds are that it is the cause of your symptoms. I'm afraid I cannot get any more scientific than that, but hopefully someone else here can!

Thanks for the reply! I feel relieved to have a possible path of treatment to pursue but part of me still feels like "what if the IVIG doesn't work?" Partly because I have been let down so many times by different treatments. The only one that has even come close to having an effect is curcumin and LDN.

Moderator

Hi @crypt0cu1t - I suggest you take one thing at a time. Don't worry about what if this or that. I've tried dozens of things over many years and each time I come to an apparent dead end and think, oh there's nothing left, I've tried everything, I come across something I haven't tried yet, and I have made progress that way

I'm fortunate that my brain is curious. If one thing doesn't work, instead of feeling hopeless, it wants to figure out why and try something else. I love detective stories so that may be part of it!

Keep us posted how you do - you may be a trailblazer like @Gingergrrl has been!

IG: @crypt0cu1t

Hi @crypt0cu1t - I suggest you take one thing at a time. Don't worry about what if this or that. I've tried dozens of things over many years and each time I come to an apparent dead end and think, oh there's nothing left, I've tried everything, I come across something I haven't tried yet, and I have made progress that way

I'm fortunate that my brain is curious. If one thing doesn't work, instead of feeling hopeless, it wants to figure out why and try something else. I love detective stories so that may be part of it!

Keep us posted how you do - you may be a trailblazer like @Gingergrrl has been!

Were you tested for P/Q and N type voltage-gated calcium channel antibodies too then? LEMS can have a particularly nasty bite in involving a paraneoplastic syndrome in some patients and these antibodies are often found in relation to having small cell lung cancer too so a chest x-ray and possibly a PET scan should be on the cards also if you have been sick with this for less than 5 years.